Table 1 GRIPP2 reporting checklist for the engagement of people with lived experience in research

1: Aim

The study team engaged with individuals with Long COVID, with or without pre-existing mental health challenges, in order to support the quality and relevance of the study.

2: Methods

A lived experience advisory group of 6 members was engaged throughout the study; these were individuals with Long COVID, with or without pre-existing mental health concerns. They attended a total of 8 meetings with the research lead and research staff between study initiation and the current reporting, in addition to regular email communication. Advisory group members received $30/h in cash compensation for their contributions.

3: Study results

The contributions of the lived experience advisory group included advising on the study procedures, co-editing the semi-structured interview guide, advising on recruitment materials, sharing recruitment materials in their networks, discussing preliminary codes and themes, and supporting reporting and knowledge translation activities. Lived experience engagement discussions provided substantial reflections that enhanced the relevance of the study procedures. While shifting availability was sometimes a challenge, this was navigated for strong engagement, with 4 advisors remaining in the group to the termination of the project.

4: Discussion and conclusions

The contributions of the lived experience advisory group substantially improved the relevance of the study to the experience of Long COVID. The advisory group’s support with the interview guide development and recruitment efforts enhanced the study. Their insights into the data interpretation further enhanced reporting. The contributions of the group were fundamental to the success of the study and its reporting.

5: Reflections and critical perspective

The lived experience advisory group’s contributions were key to the study’s success. While attrition posed a challenge, the recruitment of a large enough group to continue to gain feedback even in the face of attrition was a mitigating strategy. Open and honest communication with the group minimized other challenges with regard to negotiating consensus on proposed changes. The overall experience of engagement was highly positive.